HI, I’m new to CIDP?
AnonymousMarch 5, 2008 at 10:35 pm
Started back in May, diagnosed in Sept, Predisone worked, well, for a couple months. Relapsed -Dec, did the 5 Day Load of IvIg, last month.
Not responding, to it, Doc advises SSDI Claim “In case”. I asked him if there were any OTHER, even alternative treatments, he advised we wait acouple months of IvIg “boosters” then, maybe try immuran?
I’m putting this out there to see if anyone has ideas I might dicuss w the Doc either tomaimize e oppty for success w the Gamma Globulin or some other direction?
Not angry, upset or anything, just tying to figure out how to play this”hand”.
Keep the Faith Kids;-)
Oh, I read Ciclosporin has shown some success, any stories??
AnonymousMarch 6, 2008 at 12:05 am
Glad you found us. You will find many differant experiences with differant treatments. Not everyone responds the same. You will see that one of the frustrating things about this condition is that there is no one answer and we are all experimenting with what works best for our individual states of the condition. Some of the known and effective treatments being used by some are:
various forms of Chemotherapy
Some are used in combination, some long term, others short term. I wish you luck and invite you to ask as many questions as you’d like and please share as much as you can as that is how we all learn from one another.
All my best,
AnonymousMarch 6, 2008 at 4:07 am
Welcome aboard the medical mystery tour! As Linda says the treatments are pretty individualized, what works for some doesn’t work for others etc. It’s hard to sit and wait for improvements but IVIg does sometimes take a little while to kick in. You might consider a combination approach – steriods + IVIg, etc. there are several people on here who go that route for various reasons. Try to have a little patience, sometimes it can take awhile to figure out what is going to work for you. It’s been nearly 3 years for me and we’re still tinkering with the IVIg dosage and timing. IVIg does work for me but it took at least 3 months before I really noticed a difference. Improvements are small but easily seen by looking backward several months or a year.
Good luck and thanks for joining our “elite” group! 😀
AnonymousMarch 6, 2008 at 9:04 am
[FONT=”Comic Sans MS”][SIZE=”2″][B]Hi Eric!
Have a seat and fasten you seat belt, it’s gonna be a bumpy ride, but don’t worry, [SIZE=”3″][I]You are Not Alone!
Here on this site you will find lots of answers, some good laughs and maybe even a few more questions.
Check out the archives of the Organization’s Newsletters too, they are an excellent resource, written by researchers and medical professionals and I’ve often printed out ones i think are pertinent to my situation to take with me to the Doctor.
We are all different here, but we are all the same as well in that we share one goal, getting through this tunnel to the light on the other side.
So Eric, come on in and stay awhile and we’ll all do it together.
AnonymousMarch 6, 2008 at 2:08 pm
I started IVIG in November, had another dose in December with SoluMedrol and nice success. Had another dose in February which didn’t last, and am getting infused as I type with an every two week schedule now and we added Cellcept. It is trial and error but might be worth asking to try Solumedrol IV with your IVIG. I think it helps everything “stick” so to speak. Good luck and let us know how you are doing…
AnonymousMarch 7, 2008 at 12:01 pm
If you have confidence in your doctor and the doctor wants you to stay on IVIG’s for awhile longer, say three months, listen to him/her. I have CIDP and I rarely felt stronger and better. ANOTHER VERY VERY IMPORTANT PURPOSE FOR IVIG’S IS TO “CONTROL” THE PROGRESSION OF CIDP, that’s what the infusions did for me. Many of us need more then the “five day loading” to find out if it’s going to work.
AnonymousApril 5, 2008 at 11:10 pm
I really appreciate your input! (Julie, V, Gabrielle, et al;-)
I’m headed for my third month of IvIg, on the 22nd, had a EMC, NCv Thursday (though, he only has the pre Prendisone Shot to compare, so this is just a “baseline”) I’ve been on the Steroids since 10-1, still am, and, it seems, that is all that is keeping me going? The IvIg seems to have a negative effect (or, at leat I take a week or more to recover from each)
Doc is double checking for ANYTHING else that might be complicating things? He seems a bit concerned it has returned more to my legs and stayed fairly controlled in my arms?
Anyway, link me, tell me more about this “adder ” to the IvIg drip? Also, if anyone has positive to say about one “Brand” over another? Octagam is what they are usuing (supposedly due to their success in other patients?)
As far as “trusting” my Doc? He seems nice and knowledgeable enough. But he is a surrogate, my Diagnosing Doc left the Parctice in Jan- leaving a 6 man group down at 4. Not much time, it seems. Though, when I asked him how many CIDP patients he has treated- he told me 11. Relatively big number for the “Big City of Roanoke VA”. How can you know?
Anyway, you advice and friendship is appreciated, I feel pretty alone, in this; the Single-Dad-Do-It-Yourselfer is pretty frustrated being told to “just wait!”
AnonymousApril 10, 2008 at 2:07 am
Haven’t had much of a chance to get to know you, however if I can be of any help please email me anytime [COLOR=Blue]jerimyschilz at hotmail dot com
Have had CIDP since 2003 and been on IVIG for 20+ years off and on. Am happy to help if I can. Take care and keep the faith.
AnonymousMay 26, 2008 at 8:37 am
Ivig FOR 10 YEARS?!
I’ve read that most folks show improvement, and quickly, w the IvIg. And, if it were HELPING, a day in a chair and a $200 Co-Pay is not alot to ask.
In my case, either the disease is progrwessin g or my body dpesn’t tolerate the IVig, well. MORE numbness, confusion, vision focus problems, tremendous fatigue. Takes me two weeks to rebound, each montb a little worse (but different)
My neuro is competent but undrstaffed and overworked, doesn’t return my calls or my faxes, doesent like the Plasmasexchange, wantsto send me to a Doc in UVA that won’t see me for 2 mo9nths.
Meanwhile, Ali (from onhere) gave me the name of a Dr Cornblath at Hopkins, that “speciaslizes” in this crud- I’ve contacted them, he wants to get me in.
I guess it’s MY problem, but,m I’m a single Dad, self-employed, headed for SSDI, l;iving in a 3500 sq ft house w a 3 acre yard , projects all around, and unable to DO anything! It’s all I can do tp change the oil an a car, or ride the Mower. Even at those things I tend to shed blood!
Nothing you can do to help, but thanks for offering- I just have to figure out how to play out this hand.
AnonymousMay 27, 2008 at 12:16 pm
Hi Eric,you have become one of the chosen ones lol, I’m Brenda and was dxed Oct 12 2007 with gbs and then dxed to cidp on Mat 5 2008 I was in hospital october 29 2007 and went through the ivig treatments as well as the steroids which I am still on but I’m being slowly weened off, the first ivig made me worse I totally fell to going into icu and being treaked and staying in there for a long time had no movement at all great time, bin there have the tee shirt dont want to do it again, when I left hospital I had a walker but I refussed to use it its been 4 months now and I can wear my heels run with the dog in the back yard not very gracefully lol and my life is about 85% back to what it was the stairs are my arch enemy but we are working on that. I neruo guy says that its the steroids that are keeping my going, I’m also on stomach stuff so that it dosent get rotten out and calcuim pills for the bones. I had about 6 ivig treatments in hospital as well as the steroids. Each person is different and so are the treatments, my guy is head of ST. Mikes here in Toronto and teaches at Uof T and I trust him with my life, had a guy at the hospital that was a wierdo he sent my home on the 12th of October saying that I had platooed and that there was nothing else to do. As for the independent part of this it is tough no dubt about it my heart goes out to you but hang in there some way some how it works out, and when it gets to hard vent in here it makes it abit easier to talk to people who understand everything that you are going through. But listen to your body it well let you know whwn to rest make good on the great days and rest on the not so good days. Hope this helps abit the hand is full of aces some times we just can see them. Brenda
AnonymousJune 2, 2008 at 3:15 pm
I’ve ben given tha Plateued mssg, as well, my current guy is thinking one of the Anti-rejection Meds, but wants advice on whickh one. I’m on 50Mg of Prendosone (less and a crash horribly) 40 of Perotonix, Lunesta (still don’t sleep- FOR 10 MONTHS!) HCTZ for bklood pressure (on acct of the styroids)
I’m hopeful about this Dr Cornblath (he’s on the Foundation’s Board and has 5 peripheral neuropathy speciaslists, under him) But, the appointment is a month away! I’m unable to work, even minor things ib the tard. My Busines is crumbling, I’m a very involved Single Dad. Going in for my fifth IvIg treatment (started in Feb) w each seeming to take longer to reccover from, than the last. I left a message for my Neuro (the ione who saiod “just wait, we’re out of options,” and, now he wants to see me?
Glad to hear you can “chase the dog in heels”, I let mine wear fuzzy slippers, lol .Seriously, It is all I can do to walk across the yard! And I have 6 acres of grass and shrubs and carsto fix and tractots to repair and 3500 sq foot of Pre-Civil War Farmhouse to take care of! AND be a Single Dad- it lookspretty grim, over here.
BUT, I have a roof over my head, food in the fridge and can still get around. I think the maon probllem is- I still try to do stuff!v If the strap me down, in Hospuital, I might just rebound, but, who knows?
Peace to You in Your Journey,
AnonymousJune 2, 2008 at 3:45 pm
Hello from Beth. I was dx with CIDP in Nov 2007 and Anti-Mag IgM with CIDP presentation in Jan. 2008
I was a very independent person. Me do it myself kind of gal. Within two months went from functioning to be totally dependent on my husband. Now have walkers, shower stools, E-Z electric Power Chair.
For over five months could hardly sit up. Was able to stand for less than 15 seconds.
Had to learn, when I could and could not push myself.
After ten treatments of plasmaphresis I’m able to walk in the house without the walker. Look like a drunk goose with flippers, but at least I’m on my feet. Can also stand for about five minutes, so back to doing some chores around the house.
I take Prednisone 70 mg and alternate with 30 mg, Cellcept was tried and stopped after six months.
I hope something starts working on you and you start to show improvement.
When your body says rest, rest is what you have to do.
How old are your children?
Will be thinking of you and praying for you. Sorry to know you under these circumstances.
The only way we have to go at this time is up.
AnonymousJune 3, 2008 at 10:58 pm
I feel bad complaining, when comparing my story to yours, and others. I can still waLK, notwell, not far. And I only fall sometimes.
I’ve not been in hospital, there is food uin the frdge and bills are paid. I just am losing my business, the hose is goi ng to hell and this former mechanic is paying shops to do work, landscapers to mow, etc, Witnb no income and no help. My Daughter is 7 my Son 18, both are great! But Maxworksand goes to school, Melanie, though very sweet, ican hardly pull the plow (j/k) Actually, her mother is a spendthrift TV addict that takes her noplace (due to being broke) and parks her in front of 1 TV then goes to watch another. So, I’m trying to use this “down time” to DO things w my baby;-) But, it ALL seems to wipe me out!
But, as I said, my symptomsare minor, by comparison. I guess my question is; How does one “Just Sit” as one’s life is crumbling?
I have ghopes this new specialist, at Johns Hopkins, can help me, byut the appt is a month from now. I pray I can endure.
God’s peace to you, as well;-)
AnonymousJune 30, 2008 at 12:00 pm
Eric the Bearman, Hi-I have a question you maybe can ask the neuro-I was dx with cidp 2000 and have had ivig since-at this point, my neuro feels I am no better, but no worse. But my usual brand of ivig was Gammagard, and a few months ago, the hospital switched me to Octogam, and I was feeling worse–looking back on it, went back to my neuro and he felt I was having side effects to the Octogam-increase fatigue, abdominal and back pain, hurt all over really,headaches, nausea, some vomiting, etc. in general I did worse–The hospital was able to get gammagard again plus I started on it at home instead of the hospital and had my first 4 day series last weekend-other than the headache, I am doing better—-I wonder if you need a different brand of ivig and are you taking any premeds before and during the ivig, such as Tylenol and Benadryl? Good luck. Emma
AnonymousJuly 27, 2008 at 10:37 pm
The Docs poo poo “different brands” theory, BUT, the gal that runs the infusion center mentioned, specifically, some patients responding BETTER to GammaGuauard, but more consitently, mojority to Octigam (my bet, it’s cheaper?)
ANYWAY, yes they’s Benedryl me beforehand. I can, honestly say, I mighta felt better one the last week out of four, after a trearment, but, two months “dry” just the Prebdisonne, I feel about the same? Troble is the Prendisone is breaking me down, otherwise- and losing it’s effectiveness>
ANYWAY, John Hopkinds Spec is recommending CellCept, Dr her local doesn’t “Like it” and is warning of possible “PML” yet won’t quote odds? waiting for call back from CDC on stats before I Jump on it.
Your thoughts an prayers are appreciated, my prayers are that you continue to improve. (Lone Ranger w no Tonto, no Wahini, unable to ride range- can’t even saddle stove!)
AnonymousJuly 28, 2008 at 5:13 am
Here, this will make you quiver… this is the letter from Roche to doctors about Cellcept and PML
Here is the relevant info out of the PDF file: of the X number of people in their global safety database only 10 had positive PML, 7 others possible. Of those 17 people 7 died, 5 got better, and 5 unknown. I don’t know how many people take Cellcept to give you the percentages but I can bet it’s probably over 100,000, maybe WAY over that, making the percentages of people who get PML very small – that they know of anyway. It’s possible there are unreported cases.
My Hopkins Dr. also wanted me on Cellcept and said the risks of PML are small, but I have other latent viruses I have no desire to reactivate either so I’m sticking to IVIg as long as my insurance pays for it.
Just for the record there are also safety alerts for Tysabari and Rituxan. I guess you just have to decide what’s worse for you – going downhill due to demyelination or risking an icky disease due to immune suppression.
AnonymousOctober 16, 2008 at 9:36 pm
OK folks, I shouldn’t complain. I ca walk, etc. Two months on the CellCept, I might say the numbness is better but the sick, kinda bloah side effect/CIDP effects are worse?!
The muscle atropy has spread to my mid back (old trauma site) I consulted an Ortho, to make sure there wasn’t like impingement, he said no. I’ve had 3 Neuros and consulted w one on the BGS Board from Johns Hopkins?
I’ve been advised I’m at “Maximal Therapy” and well, I’m not getting better? When/how do I, shoud I, press for Plasma Exchange? JH Doc and Local Dovc claim, I’m not that bad yet? I’m having trouble taking care of my kids, house, etc, even not working- isn’t non functional “bad Enough?!?
Y’all are so much more patient than I, and MAN! talk about a Lonely Fight?
what woman, in her right mind, would befriend this 46 year old Train Wreck?
Just thoughts n Opinions are sought n Appreciated,
AnonymousOctober 16, 2008 at 10:55 pm
Just a little positive note. I was diagnosed in 2003 and was in a wheelchair for almost 8 months, graduated to a walker then a four foot cane and then a regular cane and finally nothing. During this journey I felt the same way you did. No one was gonna want an old woman (I was 40 when diagnosed) , with white hair (went white at a very young age) and crippled at that. Well three years ago I ran across a guy I had went to high school with, he as going thru a divorce and needed someone to talk to. We started talking once in awhile (I was still using a cane at the time and had put on quite a bit of weight) and one day out of the blue he ask me to go out to dinner to thank me for listening to him. Well one thing lead to another and we have been together every since. Of course I still live in my house and he still lives in his but I help him with his three kids (which he has custody of 2 and partial of the other one). He has become one of my best friends. Of course he doesn’t understand everything because he didn’t see me at my worst but he doest realize that this is a very difficult thing to deal wtih and he is good about helping me. So yes there is someone out there for you somewhere you just have to be patient and let nature take it’s course. You do have to get out a little and make yourself known to people..Until then you always have all of us.
Cyber hugs to you
AnonymousOctober 17, 2008 at 4:41 am
Good to hear from you again. Two months on Cellcept isn’t really all that long when you consider it can take that long just to get your immune system under control… then you have to regrow the nerves. When I did my trial run of Cellcept my neuro told me it can take six months to stop your immune system from producing, I expect everyone is different but you might want to give it a little more time before you beg for PP. 😉 Are you still taking the steroids in addition to the Cellcept? If not maybe you want to look into that as an interim measure for a few months. PP is quite invasive and I think most neuros are reluctant to put your body through that stress unless absolutely necessary. It will, of course, be up to you to decide when that is but be prepared to have to convince your neuros and insurance company too. Keeping a journal of your progress can provide you with data to argue, like “three weeks ago I could load a bale of hay, now my 7 year old daughter has to do it for me.” And try to keep your sense of humor about all this… sometimes it’s the only thing that keeps me going.
As for the other – I know a couple of widowed/divorced women who aren’t scared of disability… where do you live? :p
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